What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Monday, May 14, 2012

More Good News at the end of the first week of Ibrutinib (PCI-32765)

The exam at clinic today at the James by Gretchen, my PA, and Dr. Byrd confirmed my lymph nodes were much smaller.

My white blood count and lymphocytes doubled but only from six to twelve and from two to four respectively, but everyone seemed happy with those numbers.

Dr. Bryd says the rise in the lymphocyte count is not a prerequisite indicator of the ibrutinib working. Not at all. I had expected a much higher jump up in the ALC (lymphocytes) with my nodes shrinking so much and the unanchored clonal B cells needing to go somewhere, but Byrd said that in those such as me with ofatumumab already aboard, may not get as big an inflection in the counts.

Hgb is stable but still a touch low, eosinophils are up a bit again, and neutrophils and platelets are all good.

My GI issues are manageable and should gradually improve. Apparently they are more common on those of us like me with big abdominal nodes. They usually decrease over a few weeks. Makes sense.

And Dr. Byrd says he reads my blog. I feel honored.

The news is very very good. Still tired and muscle pains, but happy. More soon.

So glad to hear this. My husband is in the NIH trial with Ibrutinib only, 17p deletion, and his lymph nodes are undetectable after just 6 weeks. The baseball size node under his arm was down to the size of a marble in the first couple of weeks. Best wishes to you from Brimfield, MASusan

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About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.